Tag: Advocacy

On Wednesday, March 8 Bill S-201, the Genetic Non-discrimination Act PASSED 3rd reading in the House of Commons! Canadians became closer to being able to make‎ informed decisions about genetic tests without fear. Bill S-201 passed the 3rd reading in the House of Commons. The Bill still needs to go back to the Senate but…

GENETIC NON-DISCRIMINATION ACT (GNA) On May 4, 2017 the Genetic Non-Discrimination Act (GNA), formerly known as Bill S-201, was passed into law in Canada. • GNA protects individuals from the use of genetic test results in areas outside of medical care and medical research, such as insurance and employment • GNA was created to remove…

RARE IS EVERYWHERE is a children’s book of genetically rare animals that inspires kids to embrace their own rare beauty. The author is generously donating proceeds of all future book sales to the Rare Disease Foundation. Please take a look and order a book, or two, or more! Celebrate diversity and help us by sharing…

A patient rally for a rare disease drug plan during the intergovernmental Health Ministers meeting due to the unfulfilled 2005 promise to enact a plan. CALLING ALL RARE DISEASE PATIENT ADVOCATES Join the Patient Rally for a Rare Disease Drug Plan during the FPT Health Ministers Meeting Jan 19-21 in Vancouver! There is an unfulfilled…

Medical research is offering new hope to more than half a million kids who suffer from rare genetic diseases. Our provincial governments need to step up to the plate and make these new, potentially life-saving tests available to all Canadians. To give every child a chance to see their 10th birthday, let’s tell our governments…

Seth Mnookin/The New Yorker July 21 2014 issue What do you do if your child has a condition that is new to science? Matt Might and Cristina Casanova met in the spring of 2002, as twenty-year-old undergraduates at the Georgia Institute of Technology. Cristina was an industrial-design major with an interest in philosophy; Matt was…